Husband's last camping trip

Husband's last camping trip

Wednesday, February 29, 2012

Let the moving begin!

Took the day off yesterday and rested all day long. Boy, I needed that. Have done too much and my body was telling me to knock it off. Feel better this morning. Going to get keys to the new place this morning, and start moving in. Kristen has a friend who has a truck and he volunteered to move all the boxes over today. What a sweetie. Friday, Pat & Tyler will move the big fish tank, get that done so Saturday should go rather smooth. Crossing my fingers and praying for a smooth move.

Husband has continued to decline. I told him I was getting the keys today. As soon as I told him, I knew it wasn't sinking in; "the look" is constant now. Several times after telling him, he asked when we were getting the keys. Really had to hold my tongue. There are times I want to scream about repeating myself, knowing I can't makes it all the more frustrating. He can't help it. That's what makes it so hard on me. He doesn't remember asking me 1 hour before. All he knows anymore is the minute he's in it. Everything else is gone, wiped away like on a chalk board. No memory to speak of is left. Gone, finished, done.

Thank you Debby, for your sweet comment about home help. The more I thought about it, the more appealing it is to me. I can go grocery shopping, run errands, you name it. So, as soon as I get settled, I am going to request a nurse to come in during the day, to monitor, care for, and take notice of the seizure activity during the day. I'm not a nurse, and having a professional in the house will help me get answers to my questions. I believe Medicare will pay for it. Hope so as I have no extra money to pay for home care. It's funny how I fight these decisions, then all of a sudden it makes so much sense.

Husband got quite angry with me last night. He wants me to give him $100 on the 3rd so he can carry money around in his wallet. When I told him I could not do that, but, offered $20 he told me I was spending all HIS money. Well, I had to agree with him on that point. I do spend ALL the money. On rent, food, utilities, insurance, gas, you name it, I spend it. Of course, he has no concept of money anymore, so, you have to talk to him like he is a child, explaining. Does no good though. Once he gets this way, all you can do is ignore him and eventually he falls asleep.

During my research on this deadly disease, before diagnosis, I read somewhere that they do become obsessed with money. Guess we're at that stage now. Fun. What's next?

Husband had a rough night. "Visitors" were back. A lot of seizure activity, but somehow I managed to fall asleep anyway. One of these nights, when the "visitors" come, I am going to turn over and look to see who these "visitors" are. Man, if I see a mist or an image of someone, I may just freak out. Curious to see if they are real or it's just an hallucination on husband's part. They are real to him, so who knows?

OK, so, here we go, the start of the big move. Have it pretty well organized, just want it to go smoothly. In the meantime, I will try to keep husband calm, hoping he will behave today. Like moving with an unruly 2 yr old.

In the realm of things now, with Phase I being symptoms of Dementia, and Phase 7 being the end, with all that he has done lately, I'd say we are moving into Phase 6. How I know all these statistics surprises even me. But, when you live with it you just seem to know. I can have conversations with the top Neurologist here in the city, using terminology I never thought possible, with the Dr understanding me and vice versa.

Did I miss my calling?

Tuesday, February 28, 2012

A new home, a wheelchair and home help!!

Been a few days since I've posted. To say I've been busy is a real understatement. I also said I was going to post at night, well, that worked for one day, now, I'm back to posting in the early morning.

This moving without a man stinks. The work involved! I am beat. Of course I've got Kristen & Jack, they helped so much on Sat & Sun, by Sunday night, we all three started dropping like flies.

The new house is so pretty. It has skylights in the living room, kitchen and master bath. So bright. And the fireplace. It's a Kiva Style fireplace. Modern. The kitchen has been gutted and replaced with Oak cabinets, nice counter tops. Oh, I could go on and on. Just want to get the move over and start anew.

Husband has not been doing well. Wants to drive by the new house a few times each day. He also started to panic the other night. He came out of the bedroom, holding onto to the walls, as he came into the living room, he seemed out of breath. He told me I had to switch the utilities over to the new place. I told him it was already done. Went back to bed. Got up again, came dragging his feet back to the living room and told me that there was one thing important I needed to do. I asked what, he told me I had to do a change of address, and seemed so scared about that. Asked me did I know how to do that? Yes, I reassured him, I know how to do that. He had this fear in him.

I know what it was. He could never do that, he doesn't know how anymore, but, to him, well, no one knows how to do it. I have to reassure him several times each day, all has been done.

Finally got a call back from Dr A's office. They wanted to know how he was doing, so, I told them he is not doing well, has taken a sudden decline that is concerning to me. His nurse said she would pass along that info to Dr A, see what needs to be done. I asked her where I could purchase a wheelchair, she gave me several places to call. Will do that AFTER our move.

She asked how I was coping. Told her as best I can. She asked me if I would like a home nurse to come in and help me with husband. I said I would, but, not for awhile. Explained to her that we are moving, and need to get him settled, adjusted, then will visit that. She said she thinks it's time for home help. I wanted to cry out and say, "Not yet", but who am I fooling? It is time, I know.

I knew this day was coming, but, it seemed so far in the future. Now here it is, slapping me in the knees. I'm not able to do it alone anymore. I do need help. I don't like this part. When his mom got home help, it was only a matter of months before she passed. I'm comparing, I know, but it's all I have to go on. I have been dreading this. That and the fact I have to get him into a wheelchair now. It's all happening so fast now. Doesn't give me enough time to adjust, then, bam, time for wheelchair and home help. Enough!!!

Once we get moved and settled, I'll address these issues. Until then, it's all I can do to keep me balanced and thinking straight. I am so tired, but, have to keep my eye on the end result, moving. And to watch husband for any sudden changes. How did I get here?

I certainly don't like what I'm seeing in husband. It's hurtful and scary. He's going to die, I get that, but, jeez, why?

Onto the next phase in this horrific disease. All I want is for husband to be comfortable. To feel safe and secure. Funny, no one asked me if I wanted to do this. Never in a million years did I think the unthinkable would happen to us. Never!

Saturday, February 25, 2012

This new house

Today was a busy one. Did a lot of packing and cleaning. Several people showed up to look at the house. I had to play hostess. Wasn't too bad though.

Patrick took husband to the shooting range yesterday. Husband took a bad fall while there. Poor Patrick. He was pretty shook up about it. He has never watched husband fall. Husband was OK, but a bit unsteady.

Husband has been quite unsteady for a few days now. Cannot seem to gain any balance. It's so hard watching him go downhill so suddenly. I've noticed yesterday and today, he stumbles even with the walker. His legs are almost completely gone. Just when I thought the walker would do for awhile, I am now thinking of getting him a wheel chair. Only, I don't have money for that. Will have to check with Medicare, maybe they can help me buy one?

While I was doing the packing, husband was sitting on the couch. I came out of the kitchen, into the living room and noticed husband slumped over, asleep. I woke him up, told him to lie flat on the couch. Occasionally, he would yell out in his sleep. He would call one of the dogs, I'd look and he'd be sound asleep. Then, he would have a conversation with I don't know who. He slept for about 4 hours. I had to wake him up, as people were coming to see the house. He seemed disorientated the rest of the afternoon.

Husband has asked me several times today what day it is. One time he thought it was Wednesday, the next time he thought it was Sunday, then Friday. Continually asks me what day are we moving. I get so tired of repeating myself.

Tonight I am sad. Sad that we are moving, sad that there are so many memories here in this house. The new house won't have the kind of memories we have here. The new house will have different, end of life memories. No more looking out into the backyard, remembering the BBQ's, family parties and watching the kids run with the dogs. No, this new house will not hold such memories. But, it will be better for me. Clean slate in the new place. I will always think of this house. The house that holds so much dear to my heart, but, also so much heartache.

Another adjustment. But, I am looking forward to a new place. It will be a good thing.

Friday, February 24, 2012

I believe!!

Took the day off yesterday. I have been thinking of doing nightly posts, that way, everything is still fresh in my mind. I don't sleep well anymore, because husband doesn't sleep well, and there are some mornings I come here so sleep deprived, it's hard to review the day before. Will try it out, see how it goes.

As far as husband is concerned, nothing new. Same issues. No changes to report as of this morning. Seizures continue. Not a lot left in the memory category. Same blank, haunting look. Same shuffle and dragging of the feet.

Happy to report though, since I put him on the walker, there have no more falls. He can get through the house easier. I think he has accepted the walker and the two have bonded. I was teasing him the other day as he was trying to get around the big dog. She would not budge. I told him I was going to get him a horn to attach to the handles of the walker and the next time ole' Bessie wouldn't move, just blow the horn. I got a chuckle out of him.

The dogs DO NOT like the walker. Once in awhile, the little one will bite the wheels. Bessie will go to the other side of the room when she sees the walker. My dogs, they are so funny.

I will be able to start moving in on Monday. The big move won't happen until next Saturday, but I can start taking boxes in, leaving, (hopefully) only the big stuff for Saturday. The high school boys at our church have volunteered to help load the truck next week. I now will have plenty of help. Wish the move was over with.

So, there you have it. My life, so far. Each day seems to melt into another. Each day looks the same as yesterday. No sudden changes with husband (I'll take it). It's just, well, life. As crappy as it is right now, I know in my heart God chose this for me and I feel blessed to walk this journey. It may be heartbreaking, gut wrenching and just plain not fair, but, God is there, with me, with husband.

I believe this and it's the only thing that gets me through the day anymore.

Wednesday, February 22, 2012

The New House

Not a whole lot to post today. Quiet around here the past few days. Waiting for 8 am to arrive so I can call Dr A. Anxious to talk with him.

Husband slept a lot yesterday. I kept checking on him, a few seizures here and there, nothing big. Either that, or, I am just getting used to seeing the seizures. He seemed in good spirits when awake.

When Jack got home from school, he spent some time with his dad. I could hear them talking and laughing. Was good to hear.

Anticipating the move a week from Saturday. So much still to be done here, but, I have a handle on it, just a lot of work. Want it done and over with. Excited to get into the new place though. I love the area where we are moving, know a lot of people over there. It's a quiet, gated community where everyone walks their dogs, knows each other and greets you when at the locked mail boxes or the pool.

The new house is smaller than this one. That's fine with me. There is only a very small back yard, easy to manage. The HOA takes care of all the front yards, has sprinkler system for the front, they mow your grass, weed, do it all. You are responsible for your back yard. No more weeding, raking or mowing. My kind of place. Yeah. Am looking forward to being back in the old neighborhood and a new house. Also looking forward to saving money.

Did my budget the other day. By moving into the new place, we will save money, not a whole lot, but every little bit helps. Being that I have not found a job, and don't know if I will, by moving and saving money, getting a job will be less stress for me. And, I'm all about less stress!!

Also, I just want a fresh start. There are no memories in the new place. This house has too many memories. Looking out my sliding door, I see the Patio husband built a few years back. When he was well. I see the flower garden with the wooden arbor he built. I see the pond he installed. Too much for me at times.

So, onward and forward. A new beginning for us. Jack will not live in the new house for long. He will leave for the Air Force in the Fall. Kristen will be getting her own place. It will be husband and I. The two of us. He will not be able to do anything in the new house. He will exist only in the new house. It will be different, yes, but, no memories to ponder about in my waking hours.

One and a half weeks to go. And we're off!!

Tuesday, February 21, 2012


Quiet. I love the early mornings. It's my time. I like to reflect on what the previous days have been, what today will be and, what tomorrow will bring.

For the last two weeks, I have witnessed husband decline faster than before. I am so glad I insisted on him using the walker. My gosh, he just cannot walk without it. His legs, when he walks, do not leave the ground, he drags them along. Both legs are now very stiff. When getting into the car, he has to lift each leg in.

Seizure activity is on a regular basis, all day, all night now. Even with the strength of drugs he is on, morning and night, it does not stop them all together. Thankful for the drugs, imagine it would be worse without them. These drugs are what's keeping him alive right now. Otherwise, the seizures would stop his heart.

Memory continues to be a constant struggle for him. One minute, he knows what day it is, the next, he doesn't know where he is. That blank, haunting look in his eyes is constant now. He sees, yet, he doesn't see. When he looks at you, those once beautiful brown eyes are now a dull brown, and shows no recognition, even with me. He will have a conversation with you, but, it's all one sided. He will nod his head while you are talking, but I can tell it's not registering with him.

His greatest fear to date is the swallowing issue. His reflexes are shutting down, so, I have been cooking softer foods for him. Easier for him to chew and swallow. I have watched him eat. It's slow and deliberate. He has to concentrate on chewing, then, swallow.

I will call the Dr tomorrow. He wanted me to call him in 4 weeks to give him an update on husband. 4 weeks will be tomorrow. We are also waiting for the genetics testing results to come in. We've got 4 weeks down, 2-4 more weeks to go. I am anxious about the results. We all know what he has, but, because of the rarity of this disease, the Dr wants to pinpoint this deadly disease. Also, because I will not agree to Autopsy, the genetics test will tell the story. This waiting can be hard at times. I try not to think about it.

This is where we are at, today. Basically an update on husband's condition. I can sometimes surprise myself when I read back what I just typed. I have learned so much medical terminology the last 2 years. Why, some of those long words just roll off my tongue nowadays. Never thought I would be in this situation. Course, we always think it will happen to someone else, certainly not our family. Then, the unthinkable happens.

I liken this disease to being punched in the gut. Just when you think you've got a handle on the situation, you get punched again, and again.

I don't like this, no I don't.

Monday, February 20, 2012

Another day in the life

The packing continues. I just don't understand how one can have so much stuff and not see it on a daily basis? Even after TWO garage sales, I still have......stuff. Oy vey.

And, I have to throw this out there. Why is it, when you mention you are moving, people ask when, you tell them, thinking they will be offering up their services and they start making all kinds of excuses as to why they cannot help? I had this conversation with two people who shall remain nameless on Friday morning. All of a sudden, one was going to be out of town, the other said he could help until 11:00, but that is all. I actually found it so amusing. Here are two big strong, grown men, fumbling over their own words. Had to walk away chuckling.

Husband seemed OK yesterday. Pat took him for most of the day. Pat is having a very hard time with husband's disease. He got choked up yesterday morning. Just helping husband out the door, Pat looked at me and said, "Mom, this is awful." Yes, my son, I know.

Pat took husband to the shooting range. Husband used to go a lot. He said husband had a great time. Said he smiled and talked all day. It was good for husband to get out of the house. It was good for me to have husband gone for a day.

Later, when husband got home, he told me he had wet his pants. He looked scared, but, I just had him change his clothes and did not make a big deal about it. Easier that way. I told Pat to watch him to make sure he goes to the bathroom, because bodily functions are beginning to shut down. He did fine all day, but, once he got home, well, he couldn't hold it.

I am putting this job search on hold, for now. No one is calling anyway, but, I cannot care for husband, do a move, AND, look for a job. Too much. Plus, I am beginning to think that going back to work is not God's Will for me. I have this feeling. What would be nice is for me to obtain 2 or 3 housecleaning jobs each week. The little bit I could earn would help me make it through the month. Because we are moving back to the area where we lived before, I do know people in the area, so, maybe, just maybe?

This is where I am at today. Not a whole lot left to do now, but, sit and wait to move. So much is packed up. Kitchen needs to be done, but, that's easy. Need to do the master bedroom and closet, but, I am organized, so the closet will be cake.

Until tomorrow. Stay tuned.

Sunday, February 19, 2012

Garage Sale - Check

Garage Sale went well. Got rid of the stuff I did not want anymore. Done. As far as tools, I took a good look at what husband has, and, it's workable in our new place. Will be crowded for sure, but, he doesn't use them anymore anyway, so, will keep them in storage until the time comes for me to sell them. Not now. Not yet.

Am going to take the rest of what wasn't sold to Good Will today. Got so much done yesterday. Feels good.

Pat & Christine stopped by. They were saddened to see husband in this new stage of his decline. We've talked on the phone a lot, but to actually see him, was, well, eye opening. I can talk about his decline all I want, but, to actually see it is another thing. They were going to Costco and invited me along. Now, I don't get out much without husband. I decided to go. Just to walk in the store, any store, and not have to look behind me or in front of me for husband, watching for any sudden falls, was nice. Going down isles with people who can walk and think for themselves was refreshing. My life is so different now, filled with sudden falls, seizures and total memory lapse, that to go to Costco without husband was a welcome change.

Husband had a rough night. His sleep is constantly being interrupted by choking and seizing. That means my sleep is constantly being interrupted as well. I had maybe 3 hours of sleep. Where most people welcome crawling into bed, I actually dread the nights. They're the roughest. The strangest part is, he does not remember any of it. Which, I say, is good. Imagine choking and seizing and knowing about it? It's enough I know about it.

He was talking to "someone" last night. When this happens, I like to think it's his mom. She knows what he is going through. I like to imagine she is helping him along. May sound crazy, but, when you are in this situation, your imagination does seem to run wild at times.

Today I will finish up some more packing. Would like to relax this afternoon. My back could use it. Husband has woken up, seems to be somewhere else. Not with it. I just looked at his legs. They have shrunk. Thought I'd share that with someone.

Two of my favorite shows starts tonight. Looking forward to that. It's not much to some, but for me, in my life right now, you tend to look forward to even those little things. Ah, my life. So far.

Saturday, February 18, 2012

Stuff....Be Gone!!

I have been on a packing craze. Today I go through the garage. Lovely. At least I have Jack & Kristen to help me today. I want to get everything done. Being that this move is basically up to me, I want it to be as smooth as can be.

Husband can do,,,, nothing. He is still fighting me on this garage sale. Will not get rid of anything. It is driving me nuts. I've explained many times, that, we will have NO garage, only storage, so, we need to downsize. He will not budge. Makes me want to drive a nail through my head. This is so frustrating, knowing what we CAN get rid of, how to solve the space issues, and, having him sit there and say he will not part with anything.

So, we are having our garage sale today, tomorrow and Monday (Holiday), and if someone offers to buy something, it just may get sold. I'll deal with the consequences later. End of discussion.

I read last week on the Internet that dementia patients develop a tendency to be selfish, self-centered, with the "Me, Me, Me" attitude. That is so true. Husband has turned into a spoiled, selfish little brat. It's not him, it's the disease, but, it can be so frustrating for me.

I can no longer reach him. He is too far gone. I can't have an intelligent conversation with him. I can't reason with him. This is why I just get so sick of everything, that I take matters into my own hands and make decisions.

I sometimes feel as if I'm being mean to him by doing this, but, someone has to make a decision, so, it falls on my shoulders. This is no walk in the park. I hate having to make decisions without discussing with him. But, I have no other choice.

Speaking of Dementia, husband slept ALL DAY LONG yesterday. Now, there is a blessing in this. I got rid of a lot of stuff. He'll never know it's gone because he can't remember he even had it in the first place!! A Blessing and a Curse.

So, let the garage sale begin!! Let the stuff be gone!! Give me space!!

Thursday, February 16, 2012

That day, long ago

It was 18 years ago today that my Mother in law lost her fight to this monster that now resides in my house.

I remember the day so well. I was at work, blissfully relishing in my pregnancy with my Jack. I was 3 months along. It was also my boss's birthday. I got the call from the in law's neighbor. He could not reach husband. I then had to call husband and tell him his mother had just passed away.

Sad, all so very sad. I remember husband's grandmother coming to the house. My mother in law passed at home and by the time I got there, her body was still in the bedroom. As husband's grandmother came in, she wanted to see her daughter. As she went in, she screamed and sobbed. Her other daughter helped her back into the living room.

When she learned that I was pregnant, her eyes lit up. She said to everyone there that she would pray daily that "the curse" would not affect this unborn child. This woman had lost her husband, 2 sons, and, now, her daughter to this monster.

As I look back to that long ago day, I am so sad. Sad for all that was lost on that day, sad that my Jack never got to see his grandmother, sad that this special lady had to lose her life in such a horrific way.

And now? Now, we get to re-live it all over again with husband. Today, I will not remind husband of this day, 18 years ago. Nothing needs to be said. Leave it alone. It's too raw to remind husband of his mother's passing anniversary, when this monster, or, "the curse" has been visited upon husband.

No, I will say nothing. My prayer for today will be to his mother. In it, I will request that she watch over her son as he suffers now. He's had a rough few days. It's only getting worse.

**Footnote: For those of you asking, we are now currently awaiting results of the genetic testing on husband. Jack will decide if he wants to be tested to see if he too is going to be afflicted with this disease. At this time, Jack has requested he NOT find out.

Wednesday, February 15, 2012

My Valentine

Husband slept most of the day yesterday. Then, slept good all night long. I too got a good nights sleep.

Kristen had a Dr appointment and I drove her there. I did not want to leave husband home alone, but, the appointment did not take long and we were home within 2 hours. I had stopped and got husband a coke. When I got home, I went in to the bedroom. He was sound asleep. As I bent to gently wake him up, his whole body stiffened up, then started to vibrate. I stood there with eyes wide open, watching this. Then, his body relaxed, breathing returned to normal. I had never witnessed this before. I have seen his legs tremor, but not the whole body like yesterday.

I woke him up, checked for any signs of seizure. He seemed pleased that I had brought him a coke. Seemed in good spirits.

While I was waiting for Kristen at the Dr, 4 men came in with satin vests, black slacks and red shirts. They carried one single rose and a box of chocolates. They went to the front desk, asked for someone, they were directed to the Pharmacy. They found who they were looking for, brought this lady out, (turns out it was the head Pharmacist). There, in the lobby, they sat her down and sang two songs to her, the harmonizing was so beautiful.

When they were done, everyone, including nurses, Dr's and people in the lobby applauded these guys. It was so sweet and touching. We learned it was from her husband.

After they had gone, I began thinking. (Yep, I did it again). I wondered if that had happened to me, how I would feel. It was just a touching moment.

So, I come home, on Valentines Day, to a husband who had a seizure right in front of my eyes. A husband who is dying, right in front of my eyes. But, you know what? He's still my Valentine. Will always be my Valentine.

Tuesday, February 14, 2012

The Good Ole' Days

Husband wanted to go to Sportsman's Warehouse yesterday. He wanted to get a new belt and decided that was the best place to get one. So, off we went.

This store is huge. There is everything you would need there. Now, I am not a shopper. Get in and get out is my motto. But, because husband walks in a very slow, spastic and shuffling way, I really can't look at any items, I have to keep my eye on him the whole time. Even with the walker, he is still very unsteady walking.

As we got to the camping equipment, I thought back to days gone by. Back in the day, when husband was well, we would go camping. We would plan our trip, along with friends. I would cook food and freeze it. Husband would get all of his fishing gear out, prepare the fishing poles, stock up on bait, making sure we had everything we needed in order to catch the "big one."

We would leave before the sun rose for our camping trip. Wanted to get the best spot. Once we arrived, we would set up camp and head for the water. There, we would fish all day, while children played, fell, fought, got absolutely filthy, all the while enjoying the whole aspect of camping.

Nights would be filled with bathing children, eating, enjoying a beer or two, sitting around the campfire and telling stories. The babies would fall asleep in my lap, totally exhausted from the day. The men would be sharing their fishing stories of how the "big one" got away, all the while, trying to outdo the other. We would finally all go to sleep, only to wake up at dawn the next morning, and start it all over again.

Oh, those were the days. Days in which we never thought anything bad could happen to our family. Why, we were so full of life, nothing could touch us. No harm would ever come to us.

And then, as if in the blink of an eye, here we were, husband shuffling through his most favorite store, holding onto the walker for dear life, me, walking beside him, guiding him. I could almost smell the outdoors, almost hear the roaring of the river, almost hear the laughter of children, the yelling of "Wow, look at the size of that fish", even smell the dirt. Almost.

Reality had a way of bringing me back to the here and now. I had such a wave of sadness sweep over me. I had to contain my emotions as I paid for the belt he wanted. I couldn't get out of that store fast enough.

Husband was quiet on the way home. I glanced at him several times during the ride home. Was he thinking of days gone by too? I don't know. His eyes are blank now, you can't see anything there. But, I wonder, does he remember those days? Does he long for those days?

Oh yes, those really were the good ole' days.

Monday, February 13, 2012

Chosen One

Very low key day yesterday. Husband coughed all day long. Not much of an appetite. He is on day 3 of this virus, and after about 3 days, you do begin to feel better. It's very cold outside, so, will keep him inside today.

Not a whole lot going on. Memory issues are constant now. I tried to compare to just a month ago, and there is a huge difference. Cannot retain much anymore. When you speak to him, you can only speak in two to three word sentences. Otherwise, you lose him by word four. He just does not understand much anymore. I have noticed a big problem with his speech as well. He cannot pronounce some words, struggles, looks to me, then I fill in the blanks.

Since his memory is almost gone, he is so much easier to deal with. It may sound horrible to some, but, I believe the fight has gone out of him. He seems more at ease as well. He relies on me for everything. But, at the same time, seems more agreeable with anything I suggest. Double edged sword. We no longer have discussions. I make the decisions, he goes along with it.

I got to thinking about all of this last night. Where did I get this insight to watch for this, watch for that? Who taught me to notice these changes? Medical terminology rolls off my tongue, as if I specialized in the field of Dementia. Where did I get my license to practice?

I think it would come naturally to anyone. When you have a spouse or loved one walking this path, and you are the caregiver, you automatically become more aware of symptoms, sudden changes and the decline of one's mind. I surprise even myself sometimes. How can I know all of this?

There will be no reward at the end of this journey. In truth, I am leading my husband toward his death. I am caring for him as best I can, only to have him die in the end. There won't be a cure, there won't be a happy ending. He will never wake up and remember what he once was.

And, somehow, I'm OK with it all. No, I don't want to see him suffer, but he is. I know that I am caring for him in a most loving way. He knows I love him. God says I can do this, so, I do it.

Honestly? I feel special, having been chosen for this journey.

Sunday, February 12, 2012

Dear God...

Husband has come down with this nasty viral infection that Jack and I had. He is miserable. Slept a lot yesterday. Coughed all night long. Felt bad for him. I am afraid to give him any kind of cough syrup because I don't know what would be safe what with him taking the high powered drugs he is on. May have to just ride it out. I have given him cough drops, that seems to ease the irritation in his throat. Did not go to church yesterday, don't want him around other people just yet.

There have been no falls since the cane retired and in it's place, the walker. He gets around the house with more ease. Told me last night that he likes the walker now, says it easier to walk. I'm glad he feels this way. Finally.

Jack was working in the back yard and husband insisted on "helping" yesterday. Of course, he couldn't do much. Jack told me later that "Dad was acting strange". I asked him how strange? He said, "Well, he was acting like he didn't know where he was, or who I was. Kept mumbling to himself about this "boy" who was working in his yard." I nodded my head and Jack said, "Mom, he didn't even know who I was." He said it didn't last the whole time, but, for the majority of the time. Jack finally took him into the house, told him to rest. I was at the grocery store, and did not find out about this until I was cooking dinner last night. Jack was very quiet last night. I made his favorite dinner, he did not eat.

I will be so glad when Jack leaves for the Air Force. He will no longer have to see any of this. He doesn't need to see it. I can handle it, but, not my kid.

I can remember the day when husband's mother did not know who he was. Husband was beside himself. Every time he would go see her she would call him "Sir" and explain her husband was not at home but she would let him know he had come by. She suffered so. My husband will suffer like she did. It's one thing to have your loved one terminally ill. It's another to have experienced it before, knowing what he will go through as well.

That reminder slaps me in the face every day. I remember his mom, and her doing things a certain way. Husband has taken on the same characteristics. The fear of swallowing pills, for example. She too did the same thing. She was afraid of choking. Every morning, I now have to coach husband in swallowing his pills. Breaks my heart each and every day.

Then, I look at my Jack. Dear God, Please. Please do not let him be afflicted with this as well. He has such a bright future ahead of him. Please.

Saturday, February 11, 2012

Hey, you gotta laugh

So much for the Garage Sale II. I got home from my lunch date and husband wanted to show me what he had done in the garage. Kristen had helped him he said. Went in the garage and it was so neat and clean. I asked him where the stuff was for the Garage Sale. He replied, "What stuff? What Garage Sale?" "I packed up the garage like you said to do." ((((Big sigh here))))

Mi vida loca. (translated: my crazy life)

I once again explained to husband that we are moving into a much smaller home, no garage, only storage and he cannot take all this stuff with him. He seemed agitated when I was talking to him. Why do I try to explain, you ask? He doesn't understand it anyway. So, instead of going on, I started laughing. Once he saw that I was laughing, he started laughing as well. Guess, if you can't beat em', join em'. I give up. Instead, I told him the garage looked great and left it at that.

Good thing I didn't advertise in advance. Can you imagine people showing up and husband saying to them, "What garage sale?" I repeat: Mi Vida Loca.

The tools have to go. He does not use them. So, I will shoot for next weekend. Only this time, I will do it myself.

Went to our Group Meeting last night. We talked about our will and God's will. So many questions about this. So few answers. Does God want me to go back to work? And if so, why hasn't IT happened? I come highly qualified. Is it not in His will for me to work anymore? Lord knows, we need the extra income. So, I struggle with this. What made me feel better was hearing from other people about this same struggle. All of us are asking what God's will is for us, be it job, business, facing foreclosures, marriage, relationship with others, children, you name it, I heard it. So, whatever our personal struggle is, we still rely on God and His will. And, we still question His will in our lives.

My old boss gave me a letter of recommendation. She spoke so highly of me. I read it and had tears. It touched my heart. She is such a neat person. We talked about how we miss each other, the talks we used to have in her office. She says I am sorely missed around the office, clients ask about me and even the person who replaced me asks about me. I told her I wished I could go back, but, knowing I can't. Her dad owns his own business too, and said she would let her dad know I was looking for a job. He too knows a lot of people. I will continue to search for a job until God Himself speaks to me loud and clear that I am not to go back to work. My old boss said it well. She said, "There will be someone out there who will look at your Resume, meet you and hire you, just like I did." She's right. There is someone out there. Just haven't submitted my Resume to them yet. It will happen.

Letter of Recommendation from old boss - check
Garage Sale - What Garage Sale?

Friday, February 10, 2012

Garage Sale II & a Lunch Date

Not a whole heck of a lot going on. Preparing for Garage Sale II. Nothing but tools, tools and more tools. Husband seems to have come to terms with it. He was tired yesterday, going through HALF of what he has. I would do it for him, however, I don't know tools that well. He also has storage cupboards, filled with tools. Those are going up for sale as well. Only having it Saturday & Sunday because this is mostly for men.

Husband has slept good the last two nights. Yesterday afternoon, husband came to me and told me that his legs were doing funny things. I looked, and, they were tremoring. Kept a watch on him throughout the rest of the day and evening. They would tremor on and off. I know it's the progression of this disease, but could not say that to husband. So, I suggested he stay off his feet and rest. There were no tremors when I went to bed.

When his legs tremor, it's not a pretty sight. I don't like to look at it. It's scary to watch. And it scares me. Of course, I have to keep my emotions under control because he will watch my face for any sign of reaction. I keep it light, suggest resting, all the while acting as if nothing is wrong. I have to. For his sake.

He used the walker all day yesterday. He is getting around the house better and better. If I see that he is not using the walker, I go get it and tell him to use it. He has seemed more relaxed and at ease with the walker. Something he has to get used to using.

Memory is poor at best. He never knows what day it is. He does not know what month we are in. I don't think he knows what year it is either. He will ask, I will tell, then, he forgets.

This disease is really taking a toll on him now. We can all see it. He has declined rapidly. It's happening fast now. When I first quit work, he was still able to function, slow, but function. Oh, don't get me wrong, there were declines, but, they were slow and sneaky. Now, it's happening so fast that I reckon it to a wildfire, out of control.

Excuse this, but, I have to report it. He has also lost control of bladder and the other. It happened earlier this week and he cried. As I was cleaning it up, he apologized and just, cried. I told him it was OK, to not worry about it. He has a fear of leaving the house now, in case he loses control again. He doesn't say it, but, I know.

There will come a day when I have to put him in the Adult Diapers. Will I be able to handle this one? I will have to change my husband's diapers. What a thought. Makes me cringe even thinking about it now. Something to look forward to. Great. Can't wait.

I am having lunch with my old boss today. That'll be nice. So, for about 1 1/2 hours, I get to be a "normal" person again. I get to sit at table, relax, talk without having to repeat myself, enjoy a meal without worrying about spills, choking, bathroom breaks, questions and sitting across the table with someone who has eyes that see, comprehend and have life in them.

I then come home to husband who has none of the above. And my heart will break all over again with the reality of it all.

Thursday, February 9, 2012


Husband took a fall last night. It was nasty. I heard it all the way into the kitchen. Tore through the living room, down the hall way and into the bedroom. There he was, struggling to get up. Everytime he falls, he says over and over, "I fell, I fell." It's almost like it's a surprise to him, like, "how could this happen to me?"

As I was browsing through previous posts, I noticed that I referenced "the look" alot. Then, early this morning, I realized "the look" is there all of the time now. When did this happen? I remember it being gone at times in December, but, what happened? And, when?

His eyes do not have a spark left. They are a blank stare now. His eyes used to be so full of life. They look dead to me. Even when he laughs, the eyes remain the same.

The stages of this disease can fool you. It reminds me of a light bulb beginning to burn out. It will flicker, giving you the impression that it's still working. You may have weeks of flickering, but, then, all of a sudden, out it goes, for good. I don't know about you, but, when it finally goes out, I am always surprised. Kind of like husband. When he loses something, I am always surprised. Even though he's been "flickering" for some time, why does it surprise me when it finally goes?

We met our new landlord yesterday. He tried to engage husband in conversation. Of course, he couldn't and finally glanced at me with this, "What's wrong with him?", kind of look. I told him on the phone several times that husband was disabled. Guess I should've said not just in body, but mind as well.

We are hoping to move by the 3rd of March. Let's hope the tenant in there moves soon. He has been told that she is moving. Moving may be a good thing. So many memories in this house, I'd like to forget some of them. Fresh start, new house and God Willing, new job.

The house came by so easily. Actually, stumbled on it. I love this new place. Now, if only I could say that about a job.

Wednesday, February 8, 2012

Twins, Tools and Too much

Not a whole lot happening here. I slept on the couch last night. Husband had a very rough night. As I lay on the couch, I kept thinking that maybe I should get twin beds. I can't sleep when he has a bad night, but, don't feel secure in leaving him in the bedroom alone. Plus, where am I to get money to buy new beds? Oh, I hate this, all of it.

Kind of at a loss about this. The jerking, choking and tremors are only getting worse. Even when Dr A upped his anti-seizure med, it just doesn't work. I have to call the Dr in a few weeks, touch base with him, see what he suggests.

I am feeling better today, so, I start the packing process. Can't wait. I looked around last night and, even with our garage sale, I have a lot of stuff. In the garage is another story. Husband will not part with any of his tools. He does not use them anymore and, being that we are going into a much smaller house, there is not a lot of room for them. So, I have to get firm and announce to him that this weekend, we are having a tool sale. End of discussion. In his healthier days I would never suggest he get rid of any tools. But now, they have to go. Will keep some of them, in case I need something, but, compressors, drills, air hammer guns, countless tool boxes and cupboards? For Sale.

There is a special tool box that my brother in law bought him many years ago. That goes with me. It was a Christmas gift from a special person, so, no, that will not be sold. Now, the hard part is not deciding what to sell, it's getting husband to part with them. I just don't have the room where we're going.

I hope to have the whole house packed up by end of this weekend. We can live out of boxes, no big deal. Just want it done. I am excited to get into the new place. Fresh new house. When we moved in here, things were different. Husband was not sick like he is now. In fact, he was fine. I know moving into a new house will not make this monster go away, but, for my sanity, I convince myself that we can build new memories in the new place.

My old boss has my Letter of Recommendation ready. I am going by the office to pick it up tomorrow. I haven't been back since I resigned. Will feel awkward. Maybe with this letter it'll get me at the very least an interview? There are days when I question, is going back to work a good thing or not? I'm just trying to survive. Don't know what else to do. It could be a good thing, or, it could be a mistake. I am not the kind of person who sits around and wonders about the "what if's." The only way I'm going to know if this is the right thing for me to do or not, is do it. Who am I kidding? I haven't even gotten a nod from anyone. Time will tell.

Let the packing begin!!

Tuesday, February 7, 2012


It has been 1 year since I began this blog. 1 year and 1 week to be exact. I've made progress, but, have also felt stagnant. In my first post, I said husband had about 1 year. Well, 1 year has come and gone and he is still here. If you read the first post, I associated his impending death to the leaves during the seasons. I thought that was fitting because, there are seasons for everything. 1 year I've posted, just about every day (well, maybe not every day, but hey, you know what I mean). Happy Anniversary to me? Why not?

Husband has been doing so well with the walker. I took him with me to the store yesterday. He told me he was just going to use the cane. Absolutely not, I said. Told him he was to use the walker or he would not go. He used the walker. He was able to keep up with me, slowly, but, no sudden falls, no staggering. With the walker, he now can balance himself, making his walking easier.

He told me he likes the walker! Geez, why didn't I insist on the walker before? Well, to my defense, I did, but, he argued with me. Since last week, I have taken a different approach to him. I tell him we are doing this or we are doing that, and, that's it. He agrees, may not like some of it, but agrees.

I took him to DMV yesterday also. I got him a State Identification card. Looks like a Drivers License. He was OK with all of it. Actually, I am so proud of his attitude lately. It seems like he has finally come to terms with what is happening and goes with the flow. Oh, don't get me wrong, he has his moments. But, now, I squash that immediately. I tell him I will have no more of this "bad behavior". Guess he knows I mean it now, finally.

On the job hunt side of my life, no calls, no emails. I am seriously beginning to wonder what this is all about. Does God really want me home? I don't know. Now that husband is pretty bad off, how can I leave him? But, on the flip side, the extra income is needed. I'm not frustrated about seeking employment. I am waiting on the Lord. I gave it to Him, let Him take care of it. What will be, will be.

Well, there you have it. I've got 1 year and 1 week under my belt on this blog. Husband is using the walker 100% of the time. I have still not found a job. We will be moving to a new place in 3 1/2 weeks (YIKES). But, best of all, my husband is still alive.

I'll take it.

Monday, February 6, 2012

Chapters in my Life

I sold the truck yesterday. God is working in my life. Folks, He is so real, so good, so consistent, so faithful.

Yesterday morning, there was a man who woke up and prayed to the Lord, asking for guidance in helping his brother. His brother had been in an accident, not his fault, totaling his car. This brother had recently lost his job as well. So, this man prayed and asked the Lord to guide him so he could help his brother.

I, in the meantime, had taken a call from the ad I had placed. This guy said he would be at my house in 1 hour. 3 hours later, I noticed a man looking at the truck. I thought it was the guy who had called. He came to the door, introduced himself, (was not the guy who had called), said he had been driving around, saw the For Sale sign and wanted to stop.

We took it for a test drive. He then told me about his brother, the accident, his losing his job, no money. He asked me, "Do you pray?" "Why, yes I do", I said. He told me he had prayed that morning to the Lord. He said, "I was driving down Homestead, and I was forced to turn right on your street. As soon as I turned, I saw this truck, and without my even knowing what was happening, I parked, got out and it's like as soon as I saw the truck, I knew."

1 hour later, I followed him to his house, just a few blocks away. When we got there, his wife came out and gave me a hug, then asked, "Do you pray?"

God works. Not in mysterious ways. It's no mystery to Him. He

The man drove me home. I walked in the front door and there was husband, sitting in the chair. He looked a little sad, so, I went to him and said, "Oh honey, I'm so sorry I had to sell the truck." He looked at me and said, "It's OK."

So, another Chapter in our Book of Life, closed. Another change. Another adjustment. Another decision. Another...............everything.

How many more Chapters do we have left? How long can this go on?

Sunday, February 5, 2012

Super Bowl Sunday's past

I spent the day in bed yesterday. This viral infection is mean. Feel better today, will take it easy today. Have plenty to do. Packing up this house, selling the truck. Had many calls in regards to the truck. One man showed up yesterday, but changed his mind when he saw the truck was not a four wheel drive. Worse comes to worse, I have a few people I know that would possibly buy it, I have options. Just want it gone.

Husband seems OK. He stumbled a lot yesterday. His legs look very weak and skinny. He has not argued with me about tossing the cane and using the walker. I believe he has finally, finally come to terms? It's so much easier now that I think he has in reality, given up. Bittersweet. He has now gotten to this stage in this disease where he fought to good fight, but, is powerless to do anymore.

He began to talk crazy last night. I was still watching TV in bed last night when he came to bed. I thought he had fallen asleep when he turned to me and said, "We've got to put more stuff out". I asked him, what stuff? He said, "For the garage sale. We need to put more stuff out to sell." I told him that we were not having a garage sale. He looked blank for a moment, then said, "Oh."

He had a rough night. The choking was throughout the night, those tremors are different now. His whole body seems to vibrate. Nerve wracking for me. Scary too. I don't know what to do. On one hand, I don't get much sleep, on the other hand, I need to be near him, watching for seizures and heart stopping. Oh, the perks of all of this.

Today is Super Bowl Sunday. I can remember previous Super Bowl Sundays. The food, the laughter, the company, the fun of it all. This Super Bowl will be spent quietly, at home, no company. Jack has been invited to Pat & Christine's, they are having a Super Bowl party. Jack will have fun, eat the good food. He needs to go. He shouldn't have to stay here and be around this all the time. He's a kid.

So, on this Super Bowl Sunday I will call my Mother, deal with any issues pertaining to husband and have my memories of past Super Bowl Sundays. What fun we had. Never thinking something like this could happen to us. Life, as we knew it before, was so, so different.

This road we are traveling on is scary. I don't know which way to turn anymore.

Saturday, February 4, 2012


My children were raised to share. Be kind and generous, even to a fault. They all are. Even Jack, who decided to kindly share his viral infection with me. This stuff is nasty. And, can't even go to the Dr because there is nothing they can do. So, while my beloved son is celebrating that he is now cured, I sit here and feel miserable. Oh well, let's just hope husband doesn't get it. He's miserable enough right now.

The inevitable happened. Got a letter from Motor Vehicles. They have revoked husband's license. It was a real blow to him. I breathed a sigh of relief, said a silent "Thank You", to the One above. Husband said that he was going to go see Dr A himself and kick his butt. I said, "OK". Then, he said he just was not going to go see Dr A ever again. I said, OK". Just be glad folks, that I didn't invite you to our house for dinner last night.

I had made Tish's chili recipe yesterday. I was craving hers. She gave me the recipe and I made it. Delicious. Made me feel a little better. Kristen went out on a date, Jack got invited to Pat & Christine's house to watch a movie and husband fell asleep. Around dinner time, I went into the kitchen, dished up some chili from the slow cooker and told the dogs, (who were at this time drooling) "Mama's gonna eat some. They don't know what they're missing", all the while, my dogs are wagging their tails, giving me the "Please Mother, may we have some?"

Husband woke up around 7, I offered to dish up some chili for him. He said no. He made a sandwich for himself. He came around after that. He's not happy, but, he has no choice.

Please know that I feel awful for him, but, to keep him safe, and others safe, it had to be done. Dr A didn't mess around.

As he sat last night talking to me, my heart really felt for him. He's a broken man now. First, he's told he cannot perform on the job anymore, next he's told he needs to see a Neurologist, then, he's put through a battery of tests, lasting 3 months. Then, Diagnosis Day. He's told he will die. He's told that there is no cure. Everything has been taken from him. The only thing he had left was his ability, or so he thought his ability, to drive. Well, that was taken from him by this monster as well.

I am hoping to get more calls on the truck. Had one yesterday, is still interested, but needs to see if he can find someone to install air conditioning in the truck. (It doesn't have AC) It pains husband to see his truck with a big For Sale sign on it. I know. But, it has to be done. I just want it gone. Once the truck is gone, I can close this chapter. Life will be different as we know it now. This phase we are entering into is the dreaded phase.

Husband has been stripped of his manhood. He now knows he can do nothing like he once did. Nothing. The cane is gone, replaced with the walker. His truck will be gone. Motor Vehicles revoked his license. He knows it's the beginning of the end, he knows.

And my heart cries out to God.

Friday, February 3, 2012

Who's really in charge?

Eye exam went well for husband. There was a slight change in his left eye, did not respond to light well, and the Dr noticed he has what appears to be the beginning of Macular Degeneration. On top of everything else, Macular Degeneration? Please. Spare me. Spare him. Of course they know of his condition, so, she said to make sure his vitamins had enough Lutein in them. When I got home, I checked and they do.

Husband's total left side is more affected, more advanced than the right, so, it's only fitting that the left eye is now being affected. Husband has been declining so much, that on the way home he kept asking me if he had "passed" his eye exam. Seemed "proud" of himself when I reassured him he had indeed "passed". Ugh.

I decided to take matters into my own hands yesterday. I sat husband down, told him that Dr A has sent in a request to revoke his drivers license and I was putting the truck up for sale. Period. End of discussion. It went rather well. I told him how much I loved him and was doing this not to be mean, but, to protect him and others on the road. Oh, he tried to convince me he could still drive, but I was having none of that. Told him I was in charge of this family and had everyone's best interest at heart.

I next called the local paper and, funny enough, they were running a special on advertising this week. So, I placed an ad for the truck which they will run for 6 days. I also had Kristen make "For Sale" signs and put in on the truck. Tyler wanted the truck, but, has decided not to make any major purchases since he & Susie are saving for a down payment on a house. That's fine, it'll get sold.

I feel good about the way I handled this situation. Yes, it may have seemed harsh, but, I had to get my point across to him.

Last night, as I was watching TV, he came out and gave me a kiss, then said, "Thank you", for what?, I asked. He said, "for taking care of me, being there for me, loving all of us the way you do and making me see what needs to be done." Can we all lift our glasses in a toast?

He has not been this "with it" for a few weeks now. To hear him say those words to me almost made me cry. I got through to him. He understood, he took it like a champ, (really had no choice) and the day ended well.

Amen. Thank you, my powerful and wonderful God.

Thursday, February 2, 2012

So,how's your life going?

Have had a rough couple of days. Today, I take husband in for his eye exam. That's always fun. When they ask, "can you see better here, or, here?", he sits there, smiling, ever so polite and says "yes." So, they ask again, and again. What would usually take about 30 minutes for an eye exam, for him, takes close to an hour. They are aware of his condition, but I cannot answer for him as I cannot see for him. Great joy in the morning.

Took husband to his Dad's house the other day. He started in again on his "belief" that husband does not have Dementia. Told me again that he has a spinal injury, causing his legs to not work anymore. We had a heated discussion, right in front of husband. It ended well, but, I told him I would bring his medical history for him to read, and asked him why he didn't go with us last week to see Dr A for himself. Told him when the Genetic Test results come back, I will get it in writing and bring to him. So frustrating. I told him I hate to burst his bubble, but, in elementary speaking, I told him his son has the same disease that killed his mother. Said I was tired of all of this, hard enough dealing with what I have on my plate, then I have you (meaning him) trying to convince husband there is nothing wrong with him and how fair is that to husband?

He came around after that. What else could I do? So, so frustrating.

I'm just not in a good place today. Frustrated with family members who refuse to believe that husband is sick, frustrated that I haven't found a job yet, frustrated that we are moving in 5 weeks and husband cannot do anything, frustrated with my life.

I look around at this house, knowing I have to pack it up, paint, clean out garage, do the yard work and move us to the new house. On top of dealing with a husband who thinks he can do it, and ends up falling or breaking something. And, on top of that top, trying to find a job. Ugh.

So, here we go to the Eye Dr now. Be still my heart!!